Blindness and dementia – making peace with our new normal

Blindness and dementia – making peace with our new normal

My mom is 92, cute as a button, healthy by most standards, but quality of life impaired due to blindness and dementia.
Imagine, you are diagnosed with blindness, and after coming to terms, to the best you can, using a cane to navigate a familiar place without your eyesight, you realize that your memory is failing you and you suddenly do not know the sequence of steps it takes to get to the bathroom. Horrifying right?
This is what my mom experiences every day now, and what I need to remind myself of, in order to be at peace with our new normal.
Mom lives with us in our home and I am her primary caretaker. I have witnessed many changes as my mom’s blindness progressed, which is now to the point where she cannot distinguish whether a light is on or not in a room. Now, coupled with dementia, mom struggles to maintain a sense of dignity while giving up her independence more and more each day. She, understandably, will get angry and defensive, wanting to blame something or someone else for making her feel so inadequate.
As my mom’s primary caretaker, I sometimes do better dealing with this than others. It can be both heartbreaking and exhausting. Although intellectually I know not to take any of my mom’s defensiveness personally, emotionally it can be challenging.
Working with the elderly, blind and memory impaired has helped me to keep a healthier perspective than I believe I would otherwise. I often see people in wonderful residential programs who are also struggling for their independence and identity. It is a struggle between accommodating freedoms with safety. I see it when people want to be able to go out for a walk by themselves, or drive “their car” to the store, and are beautifully redirected so that they are not reminded of what they cannot do – and guided to what they can.
Recently, I was faced with potentially removing another freedom from my mom for her own safety. I was contemplating having to put locks on her door so she could not go outside by herself. My peace was destroyed with these thoughts, until I realized that I could put a chime on her door in place of a lock. This allowed me to help maintain her dignity, as I blamed local break ins for the need to install the door chime. It was the perfect answer, another step to finding peace in our new normal.
My mom and I have not always had the best of relationships. Ironically, blindness and dementia have helped bring us closer together. It is as if the pain of current wounds supersedes the pain of past wounds. Not that I would wish this on anyone, but if it becomes your reality, it is helpful to realize that there can be a silver lining. In our case, there have been many. I would even call them gold linings, as we have experienced healing of our own past hurts and even found ways to help others who are experiencing similar challenges.
So, finding peace in this new normal life of care taking, for me comes down to finding ways to make a difference for my mom, others like her, and other adult children like me. With this in mind, I am going to start writing about our experiences in hopes it can bring some hope and ideas for others who are experiencing similar challenges. I also will write about my experiences and ideas gleaned through my work, as it is key to how I discovered our gold linings. I started a business called Mitsy Kit, after my mom Mitsy. It was born from my discovery that I could help my mom to relearn sewing by touch after she lost her eyesight, and continues to evolve to help people with both physical and cognitive impairments reignite creativity and purpose.
I welcome others comments and insights that can be helpful toward this goal of achieving peace with our new normal. All communities are stronger together. #AdultChildrenStrong #CaretakersStrong

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About Mitsy Kit

Our flagship product, The Mitsy Kit sewing and quilting kit, provides adapted materials and training to enable the blind, elderly, memory impaired, and all others young and old, to enjoy hand sewing and quilting using their sense of touch in place of eyesight.